HSCT for MS - 2 Year Update
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- Опубликовано: 18 сен 2024
- Apologies that it has taken so long for me to record another video - life got in the way! Here is my 2-year update post HSCT for MS. I have secondary progressive MS and had HSCT due to ongoing new lesions.
Please let me know if you would like me to expand on anything that I talk about or want me to chat about anything else to do with my MS.
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Is there any 4 years update?
Hi Jenny! I'm Sergio from Spain, just diagnosed, here in Spain HSCT is not a treatment or considered by neuros... So, would you recommend me having HSCT in Mexico? I mean, did your progression stop? Or lesions? I've read the sooner HSCT is done, the better is.
Hugs from Spain
Best thing you can do.....India is cheaper than Mexico and Russia.
Hello Jenny,
Did you do your MRI? Did your leasions get smallet? Have your dr recommend anything for remylination?
Hi Jenny thank for your update. I appreciate it very much. I am post 14 months now and I feel worse than before the transplant. I am like you secondary MS with a few active lesions and my edss at transplant was 6 - 6.5. I am experiencing severe spasticity and weakness and I can no longer lift up my legs to walk. Did you experience this? If so at which point did you notice improvements? I am starting to feel that the transplant has failed. Once again, thank you for sharing your journey with us.
Hi Salina, thank you so much for your comment. I also have severe spasticity (in my left leg) and it was like this before I had the treatment. As I mentioned my video nothing has gotten better, so I still struggle with that. I’ve actually just (after I posted my video) been invited to have some Botox to help my spasticity in my leg. Have you ever heard of that? Also, have you had an MRI scanner since your treatment? They always said to me that any pre-existing damage might still progress 😞
@@trippingthroughtreacle yes I had MRI done and there was no changes. I'm not expecting to get better, but I didn't expect to get worse than pre-hsct so quickly as well. Yes my rehab doctor did mention botox but honestly I'm quite scared of needles. Lol. Do share your experience if you decide on it. Have you done any rehabilitation like physiotherapy so far? I am starting Locomat therapy next week for 10 weeks. I'll share my experience with you.
@@trippingthroughtreacle but at least your immune system is cured and it's no more attacking your meylin you're still feeling the symptoms because you still have lesions in your brain... But the cause of the disease is cured 😊
@@ainyafarida9574 Thank you ☺️
@@trippingthroughtreacle you're welcome love💛..... I wanna do it too I'm sick of MS it's ruining my life 💔
Hi Jenny, I will have HSCT in November this year at Moskou.
I wonder, are you still on OMS?
Hi Esther, yes, I still stick largely to OMS, no meat or dairy and very little fish, so mainly plant-based :) I am maybe a bit more relaxed at special times (e.g. Christmas) but I prefer this way of eating now so it isn't so difficult. Best of luck with the HSCT!
Thank you for answering me! Where did you get you HSCT?
I keep following OMS but I’m also not so stressed about it lately. Although I don’t eat meat etc. and dairy and I won’t eat it ever again.🙈
I also have SPMS but only since last year. Before that I always had RRMS towards my neurologist....
I wish all the best to you! And I appreciate it a lot that you told about your experience with HSCT.
I had mine in Sheffield here in the UK as I qualified for it here luckily, as someone with SPMS and lesions still occurring. I try not to stress too much about what I eat, I found myself losing so much weight on OMS and thinking about my eating all the time... so although I largely stick to it, I don’t beat myself up if I’m not perfect!
@@trippingthroughtreacle I live in The Netherlands and they are still busy with research, pfff! It takes too long.
I’ve also lost much weight on OMS (20 kgs...).